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Crohn's Disease Forum » Parents of Kids with IBD » Switching from Prednisone to EN


 
03-06-2012, 01:13 AM   #1
Twiggy930
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Switching from Prednisone to EN

My son had his GI appointment today and the Prednisone does not seem to be inducing remission so we are switching to total EN. He is going to stay on the Pred until they feel the EN is working and then they are going to taper him off the Pred. We have to go back either later this week or early next week to learn how to insert the NG tube. My son is much more receptive to the idea of this treatment now then he was a month ago, immediately after diagnosis. He is actually kind of looking forward to learning how to insert the tube so he can gross out his friends! I am really, really, really hoping that it will get him feeling better but I got to say that I HATE that he has to do it!

Question to all EN veterans... What formula did you use? We have been offered a choice of Boost, Ensure or Modulen.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
03-06-2012, 01:41 AM   #2
Crohn's Mom
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Ok so I know absolutely nothing (personally) about EN, however I just want to say that I LOVE his attitude about "freaking his friend out"!!! LOL
Best of luck with the new treatment plan!
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DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
03-06-2012, 06:22 AM   #3
DustyKat
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Good luck Twiggy! I so hope this does the trick for your boy and he is soon in remission and feeling fab!

I'm sure Tess and J will be along with some great advice and tips!

Dusty. xxx
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03-06-2012, 06:25 AM   #4
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I hope it goes well Twiggy! Keep us posted!
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03-06-2012, 07:43 AM   #5
imaboveitall
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Twiggy, don't be hating on EN!
I am in love with it and with the NG tube.

Within HOURS of starting formula feeds via NG tube and pump, V was free of gut pain and the low grade fevers. Within a month she was free of all symptoms and back to school, full of energy, living life and continued to do so for 3 years and NO DRUGS.
She had huge weight loss before dx, from 78 to 59lb and 55in.
She was 99 lbs 4mos later. Now she is 63in and 134lb.

I was so freaked out about the idea of the tube at first that I had them SEDATE her to put it in in hosp! She went to school for the first three mos with it INDWELLING.
Then we started taking it out ourselves, SO EASY, I felt like a fool for making such a to-do over it at first!
The key is to have them drink through a straw while inserting. This keeps the epiglottis closed. V doesn't even gag with this method. It takes literally ten seconds to do.
None of her friends know she does this, unless they sleep over.

I LOVE this harmless, efficacious treatment and 3.5 years later she is still using it and shall until her growth is complete at age 16. The idea of impaired growth which so many of these kids seem to have due to malabsorption (even when they eat a good amount) is not acceptable to me when I can guarantee her nutrition this way.

Now V has always eaten food and was never "exclusive". That made it easier for her to comply with. BUT the first month she ate hardly anything.

I hope your boy gets awesome results also! Even if it doesn't put him into full remission, the nutritional benefit is worth it. V uses Vital Jr which has just been renamed Pediasure Peptide.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
03-06-2012, 10:07 AM   #6
Tesscorm
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Hi Twiggy,

I could pretty much just copy and paste Julie's post! My son has had a very easy time with the NG tube, he has always used it at night only. Inserts it each evening and removes in the morning. Although he is older than your son, he is still a 'boy' and, yes, his friends did come over and 'wanted' to watch! He's done it many, many times with friends watching during sleepovers. And, as far as I know, all his friends know about it... And, there were even instances where he wanted me to 'time' him.

He'd also lost close to 20 lbs before diagnosis and within three months gained 30 lbs and stabilized there. His first six weeks were the formula only (his formula is Tolorex and comes in a powder form). He was allowed only broth, clear juices or pop, jello, freezies and clear hard candies (ie Lifesavers). His physical hunger was manageable for most of the day but he would be hungry by dinner. To alleviate 'behavioural' hunger, I sent him broth to eat at lunch with friends and arranged with the school for the office to keep freezies on hand for him. At night, all he could have again was broth. I 'tried' to add some variety () by heating up the broth with different spices and then straining.

After the six weeks, we gradually added back all food over a period of 3-4 weeks and his dosage of the formula was gradually cut back (he now has 1/2 the dose, 5 nights per week).

Nexium is his only med.

Yes, have him 'swallow' the tube while drinking water (he would insert and I would hold a glass with a straw). Nurses told my son some people find it easier to use one nasal passage over the other - my son always, always uses the left side. Once inserted, run the tube over his ear and then use a small hair clip to attach it loosely to his t-shirt at night.

As Julie said, I am so happy that Stephen was given this treatment option. He's always been a picky eater so the nutritional benefits have really eased my concerns over his nutrition.

Good luck
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-06-2012, 10:33 AM   #7
imaboveitall
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Right, over the ear and then a small piece of tape at the neck is how we do it, plus tape horiz on the cheek.
V tried several tapes and found "Coach" tape or "sports" tape, used by athletes to tape ankles, is sticky enough to secure the tube but not so sticky that it caused pain when removing (that could not be said about other tapes!).
The tape the home health care sent was the WORST, the tape bothered her more than the tube, so seek different tapes until you find one HE likes.
You can lubricate the tube a tad with some vegetable oil if you really want ease of insertion, but we stopped doing this after just a few times.

Oh and if he keeps it indwelling, FLUSH it at LEAST THREE times per day with just water from a 10cc syringe to prevent clogging! This happened to us at first as no one told us to flush and I panicked.
More tube care: if he does remove each day, flush after removal with 50cc water and 50cc white vinegar, then hang to dry. We change tubes every seven days.

Tube size makes a BIG difference in comfort. V uses an INFANT sized tube still even though she is a big ox. It is about as big around as cooked spaghetti, maybe a tad bigger.
03-06-2012, 10:57 AM   #8
Sascot
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Hi, my son did the Modulen although he kept the tube in all the time for the 8 weeks. It certainly did the trick and he is keeping ok. Good Luck!
03-06-2012, 01:44 PM   #9
Twiggy930
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Thanks all for your advice and words of encouragement. It has definitely eased our fears and lifted our spirits.

Right now feeling a little guilty that I let him have pizza last night. He wanted to have something he really liked before he has to go without all the real food for 6 weeks. He paid the price last night and this morning.

Although we are a little apprehensive we are mostly hopeful that this will bring him some relief.
03-06-2012, 02:25 PM   #10
imaboveitall
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Save apprehension for the DRUGS.
This is totally SAFE. It will help him, even if only nutrition wise.
I'd use it with or without drugs, it's guaranteed nutrition. No more worry over what they eat, no worry over how much of what they eat is being absorbed.

V's doc speaks of its anti-inflammatory properties as the reason V's growth and development has been so stellar, and she has been so healthy overall despite active Crohn's.
You'll be glad you did it, trust me.
03-06-2012, 02:42 PM   #11
Tesscorm
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My son had McDonalds for his 'last' dinner and then McDonalds for his 'last' breakfast!! We were at the hospital and his GI stressed over and over that Stephen was to eat WHATEVER he wanted until the EN began! I felt terrible giving it to him but didn't have the heart to say no, especially when the GI kept saying 'go for it! Enjoy!'. So... pizza's not so bad!

Stephen's full dose ran for 10 hours (200ml/hr), however, once we were home, Stephen was given the option to try to bump up the rate to 300ml if he was able to tolerate it (i.e. no nausea). We didn't do it often but, once in a while, when he had a later evening and then school the next day, we did speed it up. Ask your GI if this is an option. I also didn't have the heart to take away an evening activity such as a hockey game due to the scheduling - if it was necessary, I just let him go to school late so he could finish the formula.

A couple of times, he also ingested some formula for an hour or so after school and then finished it at night. This also helped 'schedule' and alleviated a bit of hunger if he was going to have a later night. Again, ask your GI if this is an option. Keep in mind this means inserting/removing the tube an extra time.

My son did find the sensation of having the tube in his throat annoying the first few days. It never caused any pain or irritation but just took a few days 'forget' about the sensation.

Just be prepared that the 'no eating' will get tough as time goes on and as he starts to heal. Have different flavours of broth on hand - my son's favourite became a mix of 1/2 chick and 1/2 beef. I changed it up by heating it up with rosemary, basil, etc. (even a tiny bit of chili peppers! - Dietitian said it was fine and Stephen likes spicy). But no sauces - no bbq, ketchup, etc. And always strain it. Also served it in different 'containers' - soup bowl with spoon for dinner, in a mug before bed, etc. To change up the jello, I used plain gelatin with apple juice. But, in reality, while these things may have been a 'novelty', they weren't nearly enough to offset the desire to eat real food... this was, by far, the toughest aspect of the EN.

A very strange thing... my son began to watch the food channel!!! When I'd ask him why he was torturing himself, he said he felt better imagining that he would be eating those foods later. (You have to understand my son is the pickiest eater EVER... he'd never even tried soya, mustard or mayo until after EN!) When I mentioned it to his nurse, she told me that many kids on EN or TPN do the same thing... start looking through cookbooks, etc. - she thought it gave them a connection to food.

So, just a heads up to be ready to help your son with this aspect of EN...
03-06-2012, 04:06 PM   #12
tots
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I used Ensure- chocolate- on ice. Not bad- I was on a liquid diet for 6 months. I too had a
hard time getting into remission with prednisone. Finally had a dr put me on a low dose with a slow tapper. And I really mean slow. Otherwise I would flare again after a few weeks.With this flare I am on Entocourt- seems better although I dont even know yet if you taper off this one?
03-06-2012, 04:08 PM   #13
tots
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I was on a liquid diet for 6 months. I too had a
hard time getting into remission with prednisone. Finally had a dr put me on a low dose with a slow tapper. And I really mean slow. Otherwise I would flare again after a few weeks.With this flare I am on Entocourt- seems better although I dont even know yet if you taper off this one?
03-06-2012, 08:51 PM   #14
imaboveitall
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Another thought, V was tried on regular Pediasure (similar to Ensure or Boost in composition) and had WORSE gastric distress. She had to be switched to a PEPTIDE based medical grade formula that per GI "emptied the stomach twice as fast" as her gastric motility was really affected at the time.
SO if he doesn't feel right on regular food-grade formula, ask GI about using a peptide based. V could not have tolerated Ensure; she needed the more "broken down" version.
03-07-2012, 10:06 AM   #15
Twiggy930
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ARGH!!!!! We got our appointment to learn how to insert the NG tube and it is not until March 20! I had expected it to either be at the end of this week or beginning of next. Now that we have decided to do this I just want to get on with it. My son pointed out that this might mean that he has to do the EN for less time as the Azathioprine will have had more time to kick in. When did these kids get to be so smart, he's only 10!

I HATE waiting!
03-07-2012, 10:13 AM   #16
Tesscorm
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There were some comments on another thread about how smart and resilient these kids are! And, they are really great!
03-07-2012, 11:54 AM   #17
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Twiggy,
About the types of formula. I have heard very good things about the modulen although I was unable to get it here in the States. We used pedisure peptide when caitlyn tried it. SHe was not successful because she refused the NG tube and was unable to drink so much.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
03-07-2012, 02:44 PM   #18
imaboveitall
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Waiting is my ENEMY I HATE waiting for anything, esp something I have less than thrilled feelings about.
Can the GI office just let you pop in and a nurse can instruct? Ours offered to do that for us, but we ended up watching a youtube vid and doing it ourselves (not recommending this for everyone but we were daring like that and I have med/sci background).

And have you noted, Twiggy, the PLETHORA of kids on here who were dx at age 10??
03-21-2012, 07:04 PM   #19
Twiggy930
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So we FINALLY had our appointment to learn how to insert the NG tube. Sam was actually looking forward to learning how to do it as he has decided it is cool. Go figure! The awesome GI nurses explained everything to him and showed him all the equipment and he did it very calmly on the first try!!! The best part for him was that he found out that he can use a syringe to suck out some stomach acid (done to make sure the tube has actually gone into the stomach) and I fear he is now planning some "science" experiments that involve stomach acid It was actually easier for him to learn to insert the tube than it was for him to learn how to swallow pills. He was so impressed with his new skill that when we arrived home the first thing he did was demonstrate it to his 9 year old sister and grandmother just for "fun"

Tonight we are going out for his last dinner, which he as chosen to be fish and chips. I'm sure it will cause no end of GI distress but after today I think I would let him have whatever he wanted. We will try a small and slow feed with the pump tonight and see how it goes. So far this is going way better than I expected.
03-21-2012, 07:25 PM   #20
imaboveitall
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Oh AWESOME...that makes me so glad to read! It really is no big deal to insert, it's more the thought of it. The reality is kind of anticlimactic. I sure hope he gets better fast, I bet he will!
03-21-2012, 07:26 PM   #21
Tesscorm
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I'm so glad it's going well!!! Stephen's GI let him eat whatever he wanted too - think it was McDonalds for dinner, a McFlurry before bed and McDonalds breakfast! Ugghh! I think I asked the GI (we were in the hospital at the time) if he was SURE that this was okay before each meal!!!???

Tip - the stomach fluids... do NOT do it after he drinks or eats something red (Gatorade, freezie, jello - if he's allowed). Stephen and I once freaked when the fluid came out RED! We're both staring at it, of course, thinking blood! Until Stephen started laughing and said he'd had a red freezie!

Another tip - not sure if I mentioned this to you before but wrap a bit of tape at the point where the tube meets the end of his nose. This way, when he's inserting, he doesn't have to stop to see 'how much more' - he just goes until he feels the tape.

Again, am so glad it went well! Enjoy dinner!!
03-21-2012, 07:54 PM   #22
Mom2oneboy
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That is great news!! I'm so happy the appt went well and Sam got the hang of inserting the tube so quickly. I know that has to be a huge relief! We are about to head down that same road and I hope it goes as well for us.

I'm curious, how long has he been on the Pred?
03-21-2012, 09:31 PM   #23
Twiggy930
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Thanks everyone! We are so happy today.

Tess - I am totally going to do the tape trick for measuring the length of tubing. Excellent suggestion. Thanks!

Mom2oneboy - He has been on Pred for almost 7 weeks. He started at 40 mg has started to taper by 5 mg per week. At the moment he is at 30 mg. I am hoping that once he is on EN and it is working that we can taper a bit faster. Our GI said that this would be possible but I don't know what that taper would look like.
03-21-2012, 10:09 PM   #24
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Twiggy,
So glad it went well. Keep us posted on how it goes!
03-22-2012, 01:40 PM   #25
S mom
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Just wanted to chime in and say I'm glad it's working out for you so far and congrats to your son on learning to insert the tube and having such a great attitude - what a champ!!
I really hope you have great success on this treatment too - I know the doctors were skeptical as to whether or not my son would achieve remission when we started due to the severity of his presentation and the fact that he had a lot of colon involvement but it really did the trick and like a lot of others here have said, it was great for weight gain and getting the nutrition in (he gained about 25 pounds).
It took a few weeks before I really saw a dramatic improvement... I remember being impatient that he was not gaining weight sooner but he did report feeling a little better about 1 or 2 weeks after starting even though his weight was the same.
I'll be waiting to hear updates
03-22-2012, 02:43 PM   #26
Mom2oneboy
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S Mom, how long did it take your son to get into remission once he started EN?

Just wanted to chime in and say I'm glad it's working out for you so far and congrats to your son on learning to insert the tube and having such a great attitude - what a champ!!
I really hope you have great success on this treatment too - I know the doctors were skeptical as to whether or not my son would achieve remission when we started due to the severity of his presentation and the fact that he had a lot of colon involvement but it really did the trick and like a lot of others here have said, it was great for weight gain and getting the nutrition in (he gained about 25 pounds).
It took a few weeks before I really saw a dramatic improvement... I remember being impatient that he was not gaining weight sooner but he did report feeling a little better about 1 or 2 weeks after starting even though his weight was the same.
I'll be waiting to hear updates
03-22-2012, 09:27 PM   #27
S mom
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He started it in mid September and I remember going for an appointment to see the GI at the end of Nov. and thinking that he seemed symptom free at that time and the GI agreed - so if I had to guess, I'd say about 6 to 8 weeks? which is actually quite amazing considering how sick he had been. I think the worst of the symptoms had decreased about 4 weeks into it and he was starting to pack on the weight and get some colour back. He continued on EN until mid Dec. (12 weeks) - just to "make sure" and then started eating again (hooray).
I remember that it seemed overwhelming and quite daunting when they suggested it but once we got used to it, it was no big deal... just part of the daily grind - and I joked with my son when he was done that it was much easier feeding him when I could just dump a can in a bag and let the pump do the work!!
03-25-2012, 11:33 AM   #28
Twiggy930
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The feeds are going well, aside from a few technical glitches here and there, but last night he started having blood in his stool! Of course this happened when my husband and I were out at a wedding. He had blood in his stool before diagnosis but never this much. He has also had an increase in the number of BMs. This STINKS.

Why do things like this always happen on the weekend. Trying to decide if we should contact the on call GI today or just wait until tomorrow and contact our regular GI through the GI nurses. At the moment I am leaning towards waiting until tomorrow, unless of course things get worse.
03-25-2012, 02:31 PM   #29
imaboveitall
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AW, Twiggy...what in the holy hell? I don't think the formula caused it...unless he needs a more "broken down" version. Violet required a peptide based formula to see results, the regular one made her worse.
Just some hugs and love
03-25-2012, 06:30 PM   #30
Tesscorm
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Stephen didn't experience anything like that either. He did have a few incidents of mucus with specks of blood, but just 'specks'. This would last for a day or two and then disappear. He also had 'diarrhea' for the entire six weeks of formula only. I know this isn't the case for everyone but we had been warned that it is common - only liquid going in so... liquid coming out. I would call the on call GI, if for nothing else but some reassurance.
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